This week is the beginning of a New Year’s adventure! Looking to the year ahead, most lupus patients, like me, are clueless about what to expect. Lupus differs in its symptoms and severity from one patient to the next, and from time to time within the same patient.
“The one predictable thing about lupus, is that it is absolutely unpredictable,” wrote rheumatologist Paul Howard several years ago in a narrative report supporting of my formal work ADA accommodation request. This comment stuck with me, and I have often quoted Dr. Howard’s apt description of the ever-changing face of lupus.
It sounds like a great idea to set some specific measurable and attainable goals to improve management of my lupus in the next year. Starting with a brief assessment of changes to my overall health and lupus in the last year, I am focusing on ten major areas of emphasis. Looking back at the status of my health in the last year may help identify some cause-effect relationships to consider before formulating health goals for the year ahead.
Sleep/Rest – I had trouble sleeping often due to pain from neuropathy in my legs. Instead of staying up late, many nights I drank a cup of hot decaf tea with honey and milk, sometimes while soaking in a 1:00 a.m. hot tub bath before going back to bed. More often than I would like, I have had to reach for Ultram to control neuropathy and joint pain well enough to get sleep.
- Goal: I need more sleep – plan to go to bed at least 1/2 hour earlier each night
- Goal: Try to get one afternoon nap each weekend
Nutrition – This is an important part of any health battle. In 2011 I cut out most of the empty calories and highly glycemic foods: white bread, chips, high calorie salad dressings, cakes, cookies, candy and sugared sodas. My husband and I packed lunches consisting of lean meat roll ups, and a variety of fresh fruits and vegetables. We reduced carbs way down at dinner, strictly limiting carbohydrate serving size to about 1/2 cup, and we doubled the vegetable servings to twice the “serving” size on most frozen food packages. I replaced sugared flavored coffee creamers with 1% milk and sugar-free Torani flavored syrups.
- Goal: Continue improved diet as in 2012, watch not letting carbohydrates creep back into my diet
Exercise – My aerobic exercise was sporadic. Some months I was consistent using my fluid trainer to cycle indoors, getting my heart and lungs pumping. Days I exercised, my arthritis pain and CNS lupus symptoms were greatly reduced for the rest of the day. During the year, I took up doing yoga exercises, and was able to increase my back flexibility, range of motion and strength. Also, the yoga turned the tide on my stomach fat, and for the first time in over ten years, my tummy fat is getting slimmer.
- Goal: Increase cycling to least 3 times each week
- Goal: Continue yoga, do it more often and increase duration from 15 to 25 minutes 2 to 3 times per week
Weight – because of the positive changes in nutrition and exercise, I have lost 22 pounds in the last year. The great part is that my husband and I have both lost almost the same amount. I lost one dress size, and am enjoying easier breathing (with my asthma) and have gained strength.
- Goal: Lose the 4 pounds gained between Christmas and New Year’s by the end of January 2012
- Goal: Lose 5 more pounds by Easter
Stress and Fear of the Unknown and Uncontrollable – The economy, increased prescription premiums, gas prices and our daughter and son-in-law moving in were stressors. Also, during the year I studied for and passed a major professional certification exam, and traveled out-of-state three times. I dealt with my father’s failing health and Alzheimer’s disease. Dealing with impaired CNS cognition, short-term memory, pain and fatigue bring lupus-related stress and humbling limits into my daily experience.
- Goal: Pray during each day and stressful situations, seeking God’s help and wisdom in coping and gaining accurate perspectives
- Goal: Read and study the Bible for age-old truths, guidance, knowledge of God and very real help I cannot manufacture on my own – read the Manufacturer’s user’s guide for operating
- Goal: Play the piano daily – the mental exercise helps sharpen mental clarity, the music impacts emotions and increases endorphin levels, the hymns I play linger in my thoughts and inspire and encourage me throughout the day
Work – My challenges this year included the headaches of my professional work responsibilities managing a government attorney’s office, including financial issues associated with operating during a recession. Due to increased lupus flares, I lost more work days than I wanted to, exhausted my accumulated sick leave and tapped vacation leave in lieu of sick leave. I start work at mid to later morning, but worked too long most nights, not getting home until after 7:30 or 8:00 p.m. One day each week I telecommute from home.
- Goal: Leave office by 6:00 or 6:30 every night to go home
- Goal: Reduce sick leave usage to prevent use of vacation as sick leave
Overall Health – Fall brought a long sinus infection that took three antibiotic prescriptions to clear it up, impacting my overall health. Thanksgiving week two boxes full of books fell on my back and head while I was on my hands & knees getting stuff out of a low cupboard, causing severe neck and upper back stiffness for over a month.
- Goal: Be careful and watch for hazardous situations to avoid injuries
- Goal: See family practice doctor immediately at first sign of any infection
Lupus Severity – The severity of my lupus continued its 2 year escalation of severity, until Benlysta infusions began in the fall.
- Goal: Demonstrate behaviors that will work along with Benlysta’s efforts to heal my body
- Goal: Remember to confirm infusions the day before
Lupus Symptoms – This year brought increased fatigue, malaise/nausea, mouth and nose ulcers, mental confusion, painful evening peripheral neuropathy, and increased discoid rashes on my hands.
- Goal: Log my symptoms for more accurate recall during rheumatologist visits
Lupus Treatments – Increasing baseline prednisone dose during the first half of the year, to deal with increasing symptoms with monthly Benlysta infusions that started in August, permitting the beginning of a slow taper of my steroids. I am ending the year at 7.5 mg per day.
- Goal: Continue prednisone dose taper over the next 6 weeks to reach the next prednisone reduction milestone by the end of January 2012
- Goal: Attend all scheduled Benlysta infusions
- Goal: Make and keep scheduled rheumatologist appointments
- Goal: Order medication refills early enough to avoid gaps in taking them
The year ahead will to some degree be what I make it. The decisions, habits and daily choices I make between now and December 31, 2012 will impact the outcome of my lupus and ultimately affect the quality of my lupus “adventure” in the year ahead.
What are your challenges and goals for this coming year?